Caregiving is never easy and it takes many people to provide the
appropriate support services for all. Traditionally, we think of
the physician as the point person for primary care. However, with
all of our medical advances, most diseases have become chronic
illnesses that require a range of health, social, emotional,
environmental and physical services in addition to medical care.
Since the health and social service systems are fragmented and
difficult to navigate, private care management has evolved to create
a partnership that guides families through the caregiving process.

This partnership between the care manager and the family
facilitates the coordination of appropriate care at the appropriate
time, in the right setting and in accordance with the preferences
and resources of each situation. What a colleague of mine calls the
“Goldilocks” approach to individualizing care for each situation.
Rather than trying to describe the partnership between the family
and the care manager, below is an actual situation that resulted in
assuring that the care recipients were well provided for, the family
was given peace of mind, and the doctor had someone who could assure
that his plan of care was actually being implemented in the home.

One Family’s Story

Mr. and
Mrs. Chasser (not their real name) were faced with multiple care
decisions as they were living in South Florida away from their
family and beginning to deal with long term care needs. They were a
worldly couple who had saved enough financial resources to meet
their needs in retirement. They had done some traveling and were
now content to stay at home as they began to experience some
physical and cognitive changes.

Mr. C
was 82 and relatively healthy, though he was beginning to experience
some memory loss. For this reason he had asked his wife to take
over the daily money management. Mrs. C was 80 and had a heart
condition for many years. She began to tire more easily. She also
had some osteoporosis that caused discomfort and limited her ability
to walk long distances.

Mrs. C
was also becoming increasingly anxious. She remembered her
mother-in-law’s “senility” and feared this was happening to her
husband. She had never had to be responsible for money management,
investments or legal issues and did not know what she would do if
her husband lost his ability to handle these needs. On the other
hand, she was afraid to ask him to teach her because he was very
sensitive about his memory loss and she did not want to upset him.

After a
trip to visit their grandchildren, Mrs. C experienced a stroke that
caused her to become very weak and she lost her language. Although
she was expected to regain some of her mobility and speech, she
would never be as active again. While Mrs. C was in the hospital
and rehabilitation center, Mr. C realized that he could not manage
at home alone. He was unable to take care of the shopping, meal
preparation, laundry or housekeeping. He also had difficulty
dressing himself because his wife had always laid out his clothes
for him. He became very frightened and began to knock on the
neighbors’ doors at all hours of the day and night.

Finally,
one neighbor called the Chasser’s son to express her concern. The
son had not been aware of the extent of his father’s memory loss or
his inability to manage at home alone. Mr. C kept telling his son,
Brian, that he was managing just fine. Brian flew in to visit his
parents, as planned, when his mother was going to be discharged from
the hospital to a long term care facility for rehabilitation. Upon
arriving at his parent’s home, Brian found his father sitting in the
dark crying because he could not remember when his son was coming
and he thought that his wife had already been moved and he could not
remember where she was sent. Furthermore, there was no food in the
house, which was unkempt and Mr. C was wearing dirty clothes. Brian
suspected that his father hadn’t bathed in several days.

While
the hospital social worker was able to assist Brian with his
mother’s care, she was unable to help with his father because he was
not a patient. She suggested that Brian hire a private care
manager, who would be able to help him coordinate the care of both
parents regardless of the settings they were in. The care manager
could also help with integrating the different services and payer
sources to provide the optimal plan most efficiently.

The care
manager spoke with Brian and discovered that there were several
levels of need and a variety of sources of support for his parents.
After an assessment of each parent, the care manager helped Brian to
determine the best care for his parents at this point and to help
him identify what the future needs might be as well.

Mrs.
Chasser did go to a rehab facility where her care was covered by her
Medicare and supplemental insurance policies for two weeks.
Depending upon her progress, the care manager would help the family
determine if she should stay in the facility or come home to
continue therapy. Because the Chassers had a long term care policy,
they would be able to continue rehabilitation beyond the Medicare
benefit period.

Mr.
Chasser also needed extensive care. The care manager felt that Mr.
C was experiencing an exacerbation of his cognitive losses because
of the stress of his wife’s illness that was causing him to feel
frightened and stressed to the point of depression. The care
manager arranged for a complete neurological and psychiatric work-up
through a local memory disorder center. This resulted in a
diagnosis of probable Alzheimer’s disease. This diagnosis qualified
Mr. C to access benefits for home care under his long term care
policy as well. An aide was placed with Mr. C at home on a twenty
four hour basis. This was seen as temporary until his wife’s plan
of care was more definite.

The care
manager also arranged community services for Mr. C. It was felt
that he could benefit from a day care program to provide him with
stimulation and socialization, while his wife was in treatment. A
medication dispenser was brought into the home to assure compliance
with medication routines. Grab bars and a shower seat were added to
the bathroom to make it safer. A personal emergency response system
was installed in an effort to determine if Mr. C could learn to use
it in anticipation of his wife returning home and the possible need
for this service.

The care
manager also worked with Brian to help him understand how the long
term care policy would work and how to allocate its use so that the
pool of funds would not be depleted too quickly. This was a
particular concern for Mr. C because he was healthy and could live
with his dementing illness for many years. If he used all of his
benefits early on in the disease process, this would leave him
without support in the later stages of the illness when he would
need more help, not less.

The care
manager was able to work with this family to bring Mrs. C home after
her rehab stay. They were able to be alone for 14 hours each day
with the ERS in place. Gradually, as Mrs. C became more frail and
Mr. C more forgetful, they had to again have 24 hour care. Mr. C,
however, was able to continue in day care so that the aide would not
be overwhelmed with the care of both of them every day.

Eighteen
months later, when Mrs. C died, the care manager helped the family
support Mr. C through his grief and eventually move him to an
Alzheimer’s specific assisted living facility. After a brief
adjustment period, Mr. C began to flourish in the new residence. He
began participating in social activities, he made many friends and
he once again seemed content.

Brian
and the rest of the family were grateful to the care manager who
helped them navigate a complex, fragmented system of health and
social services for his parents. Because of his lack of knowledge
of these systems and the particular illnesses that his parents had,
he felt that he would not have been able to handle his parents’ care
as well as he had. He was also relieved that although they spent
their own resources to pay for their care, there was still an estate
that would help him with his children’s college education. Finally,
as a result of the education he received through this wrenching
experience, Brian began to work on his own financial, insurance and
legal planning for the potentiality of his own disability. He did
not want his children to be left without guidance, as he had by his
own parents.

Rona S.
Bartelstone, LCSW, BCD, CMC, C-ASWCM, is
Senior Vice President of Care Management
at Senior Bridge. She has worked in
eldercare for more than 35 years. During
this time, she had her own care
management and homecare company, Rona
Bartelstone Associates, from 1981–2008.
Rona has taught at Nova University in
their Masters Degree Gerontology
Program, and at FL International
University, Graduate School of Social
Work on Geriatric Care Management. Rona
is a also family caregiver for members
of her immediate family across three
generations.